Tired on Tamoxifen
Most things I have read explain it away as a delayed side effect of chemo or radiation, or suggest dietary changes and more exercise. I'm just saying, nope. I think this is really the drug making me feel this way.
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You are right. I've been so tired since being on tamoxifen. In fact, I'm almost nonfunctional. I can barely get anything done and have seen multiple doctors about it with no results.
The problem is the drug manufacturers and the doctors don't acknowledge fatigue as a symptom of Tamoxifen. I believe they cover it up or dismiss it as an infrequent symptom. I go to the top Oncologist in the country and he dismisses my complaints about fatigue. I've done extensive research about alternatives to Tamoxifen and despite the "advances" in breast cancer treatment, there is no alternatives for pre-menopausal women.
I'm debating going off the drug in order to get back to living. Not a fair choice for any woman.
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couldn't agree more. I have been on tamoxifen for just over 6 months and although I have had none of the usual side effects (hot flashes etc) I feel like I am permanently on go slow. Not just tired but also just not fully with it. My diet and exercise are good, I also meditate and do yoga but there is no doubt that the tamoxifen has cast a veil over me. I too have discussed coming off the drug with my oncologist but there really is no acceptable alternative and I am not open to taking the risk of increased chance of recorrunce. It would be great to hear any ideas on helping these symptoms. On a sideline I am definitely more short fused too which I think is s side effect of the tiredness
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It took 2 years before an oncologist said it could be the Tamoxifen causing my extreme tiredness. It is difficult to cope with daily life sometimes.
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The extreme fatigue sounds like the fatigue I started experiencing around the time I was going through menopause. I was taking estrogen in the 18 months or so that it took for me to go through menopause, and during that time I was having really debilitating fatigue. I figured out eventually that the hormone changes I was going through somehow allowed the estrogen to start interfering with the uptake of thyroid hormone. After I was diagnosed with BC, just as I started to feel less tired, I stopped HRT and felt perfect again...physically. Mentally I was a wreck. It's well know that estrogen and thryoid hormone interfere with each other. Several of the women in my family are on Synthroid due to hypothyroidism and the ones who are using HRT are constantly trying to balance the two. Maybe tamoxifen is doing the same thing as the estrogen, which wouldn't be too surprising considering that it works by attaching to estrogen receptors. Check out the symptoms of hypothyroidism on line. I was also having leg cramps and leg muscle pain, as well as the other 7 or so symptoms. Maybe need to have thyroid checked?
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I have had to change my entire life around this fatigue, including leaving my professional career. I am learning that I must focus on my wellness. When making decisions, I try to ask myself, how does this support me?
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some days (today being one) I just feel weak and like doing anything is an effort, and just overall 'blah'.
I figure it's probably either the Tamoxifen or the menopause.
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update: I went for a visit to ask some questions and was told that often the side effects get better after taking it for 6 months. (I know, for many women it does not get better). She suggested I take it at Night to see if that might help. I am now taking it at night and that has helped me. I know that won't help everyone but I wanted to at least put it out there as my experience.0
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further update: I am still tired, 10 months taking Tamoxifen, I had no chemo,no radiation to blame. I am functioning, I get plenty of sleep, eat right and get my exercise but still... I am tired.
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Did you get your thyroid levels checked?
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I'm so glad I'm not alone on this issue. I've been noticing some real fatigue having just started tamoxifen. Does it ever get better? Is there a threshold of how many months on tamoxifen until the fatigue starts to leave? I'm pre-menopausal, so I'm worried the fatigue will become a new daily problem.
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louder,
I was on tamoxifen for 17 months before taking a four week break. Fatigue was probably the most disruptive side effect and it seemed cumulative. My bedtime was 8:30 pm. It lifted surprisingly quickly during the break. I've been back on for two weeks now and I'm afraid the fatigue is back, but I'm really hoping today is just a one-off.
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I’ve been on it 20 months and still almost fall asleep at work daily, crash and take naps all weekend, and still have extreme insomnia despite trying melatonin, liquid valerian root, essential oils, sleepy time tea, restoril, ambien, and lunesta. I’ve just learned to live off about average of 5 hours of sleep
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I’ve been on Tamoxifen for two weeks and I am exhausted. I was blaming it on Rads but after reading this thread I’m thinking it may be the Tamoxifen.
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I have been on tamoxifen since July 2017. First couple of months, hot flushes only. Not a game changer. The last few months the fatigue in the afternoon has been crazy. If I don't get something done in the morning, it doesn't get done. Typically I am a high energy person, but lately I can't get out of my own way, even after my afternoon 2-3 hour nap. I have tried taking mini-breaks from the tamoxifen, about two weeks and see a big difference in not being tired. But then I get nervous about not taking it, and start again. And then the fatigue sets in after a few days of taking it.
Maybe it is time to ask my oncologist what my true risk for recurrence is. When I do cancer math it shows that I would get an extra half a year of life with the tamoxifen. I need to really think about this. I am not sure if I go off the tamoxifen if I might have a higher risk of developing cancer in the contralateral breast because of the brca2 positive gene mutation. I think cancer math does not take that into account. I guess I am lucky that I can take the naps that I do!
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GardenGypsy, Thank you for posting that tamoxifen is changing your professional life. I worked through the year of surgery (except right after surgeries) and chemo, and now I am so tired on Tamoxifen I cannot continue to work full-time, I tried Arimdex and Aromocin, but they also be caused unmanageable fatigue.
I put my head on my desk several times a day and find getting up at 6:00 am, something I did for years without a problem, is now a battle. When I was diagnosed, I really had no understanding of what the experience would be like, but I had not thought that fatigue would be the side effect that would end up forcing the most concrete life changes.
Reading these posts, I see others questioning taking tamoxifen long-term in hopes it will prevent a future occurrence when it affects quality of life now, I have not been able to have a good conversation with my oncologist about it, either. My guess is that it's an amorphous symptom that could, and often does, have many complexities. However, cancer is so life altering, and now the resulting fatigue itself is starting to change my identity. I could always push through something if I wanted it bad enough, but now, I have to concede that this strategy has its limits. I did start talking with a counselor who specializes in people diagnosed with cancer and cancer survivors, but I am also wondering how others are managing putting this all together.
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Dear TheCowsAreHome,
Welcome to the BCO community. We are sorry for your diagnosis and struggles with Tamoxifen but glad that you reached out. We hope that you will find support and information here that will help you along the way. Please let us know if there is anything we can do to help you to navigate your way around the community.
The Mods
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I started Tamoxifen one month ago. I was fine for a week. The subsequent weeks have been horrible. I told my Dr today that I do not know "this person" (signaling to myself). The fatigue is terrible - I wake up tired. I can't do the things I love because I am exhausted. My face is puffy. I have strange pelvic pain (pressure?), I feel numb (not experiencing happiness, which is completely NOT M ). I feel sad all the time and frequently cry but I am not sure what I am crying about. I feel dehydrated and no matter what I do I am thirsty all the time. My eyes are dry, my throat is sore and my voice is hoarse. I am confused and spacey and not communicating well, and my bowels are not normal. The Dr thinks I could stop taking it for 3 weeks and see how I feel. She said some people just don't tolerate it well, and others have very few side effects. At some point quality of life has to be considered. I am sending good vibes to all my sisters who are struggling with similar issues.
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Hi all,
I started taking Tamoxifen on Feb 16 this year, I had a lumpectomy, a month of radiation and seven months of chemo, AC and Taxol. I don’t ever remember feeling like this even on chemo! I have NO energy now for 9 days, walking like a zombie around the house, shaky legs, fuzzy thinking, can hardly lift my arm so tired but can’t sleep! I have been very active lately, traveling etc making up for last year but this sudden crash occurred 9 days ago and I just couldn’t get out of bed! Anyone else like this?
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Hi TS1, and welcome to Breastcancer.org!
We're so sorry you're managing this difficult side effect. You may be experiencing fatigue, which can be a side effect of a breast cancer diagnosis itself, as well as treatment. There's some great information on the main Breastcancer.org site's section on Managing Fatigue that may help!
Others will surely be by shortly to weigh in with their experiences. We hope you get answers soon!
--The Mods
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I have been on it for almost 2 years and STILL have insomnia despite trying everything under the sun and fight extreme fatigue DAILY.
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According to my Fitbit, my sleep is actually quite reasonable, but I am drained nonetheless. I wake up with hot flashes a few times a night, especially around my period, but fall back asleep relatively quickly. I do take 10 mg of dual release melatonin to make that happen. I exercise pretty hard six days a week for 30-60 minutes and do something lighter on my rest day. I eat a diet high in vegetables low in meat. I think I'm doing all the right things including going to bed at 8:30. Work, workout, eat and sleep. It's hard to even get the house cleaned (perhaps that should be my light activity...). I took a four week break from the drug and I was able to stay up later, my head was much clearer and at one point I was feeling the normal old kind of tired from pushing myself. Such a different feeling! Just wanted to share that you are not alone.
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IT's interesting how many of us are taking a break from the drug. I have crushing fatigue that I basically hide from my family cause they stress. I sleep ok but only about 6hrs a night, I have a nap in the afternoon and I just power through with a lot of coffee. I'm active and don't want to stop living my life. I get debilitating vertigo that gets to the point that i can't shoulder check while driving. I've been on Tamox since Nov. 2016 and after the first 9 months i was ready to basically quit. I took a month off and talked to my doc and decided we would do 5 months on, one month off... that worked well but I find now after my month off, when I go back on the symptoms come back hard and heavy. ..... sigh.... no real point I'm just complaining cause I don't want to complain to my friends/family - so i'll complain to all of you hahahah.
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Update: I have now been on Tamoxifen for 15months and no longer fighting fatigue. Can't remember when it got better but it must have been shortly after my last update. Sorry for not updating sooner (once I felt better I wasn't hanging out here) but I do want to share that for me it did get better. Maybe knowing that will give hope to you who are still suffering. Hugs sisters!
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I have been talking tamoxifen for twenty months now since lumpectomy and radiation. Tamoxifen and I have had a pretty rough time so far, I’ve developed severe migraines and osteoporosis, all of which are being treated with success. However I continue to have debilitating fatigue, and it seems to be worsening. I will get attacks that can last for up to 48 hours, I can barely move, and it seems as if the only thing that helps is to lie completely still until the fatigue subsides. It comes with body aches like I have the flu with no fever. I’m wondering if anyone else has had this experience? I’m 46 years old and am wondering if I might be pre-menopausal or something and that is why symptoms are worsening? I am considering approaching my oncologist with strategies to go off the drug for a time. I work full time with children and cannot function in my life very well.
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I can’t say that I’ve had the same experience that you’ve had, bringityellow, but after 23 months on Tamoxifen, I was just granted a 6-week reprieve from it. My MO said that I wasn’t tolerating it well with SEs of fatigue, joint pain, hot flashes that were getting worse over time, not better. I don’t know what will happen after those 6 weeks are up. Back on tamoxifen or switch to something else or just take the increased risk of recurrence? It’s worth talking to your onc about a break, IMO
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I’m so glad you posted this! I’ve been on Tamoxifen just over a month and I feel exhausted in waves. Like I’ll be fine and get stuff done then a couple of hours later I can barely lift my head. I am normally a really energetic 47 year old but I can’t believe how wiped out I am. I did have Rads and we did get a new puppy so that probably hasn’t helped but man. So far I’m only getting warm flushes. I’m hoping they don’t get worse because I’m getting a lot of them today. It would be awful if they turned to hot flushes. I take magnesium, fish oil, glucosamine, calcium, vit D and the odd iron tablet. So far no aches and pains. My plantar fasciitis is actually a lot better.
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I've been taking tamoxifen for 5 years now, and no, the fatigue doesn't go away. I don't think there is anything that will help I've asked myself. 5 more years on this crap. Lol
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Welcome, Goingstrong! Halfway done
we hope you find the support you need here to get through the next half!The Mods
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Hello all, just want to chime in on my experience. I have been taking tamoxifen since January. I met with my oncologist after 4 weeks, and didn't have any major side effects, maybe the occasional hot flash that lasts a few minutes. He told me that it may get worse, and to watch for other SEs. Now, 6 months later, I feel hot flashes almost daily. Luckily, it only lasts a couple of minutes. I also feel really tired between 3-5pm each day. Since I work a desk job, I take my lunch around 2 pm and do errands or walk for 5-10 minutes, and then have coffee. Moving around helps me get through the last couple of hours of the day. I have increased my weekly exercise from almost non-existent to 3 hours a week for the last couple of months, but that hasn't helped reduce the daily fatigue. I am sleeping better, so that's a plus!
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I too am experiencing extreme fatigue on tamoxifen. Feel like I can't be bothered doing anything and everything is too much effort. Struggle to get out of bed in the morning and need a couple of hours sleep each afternoon. It's stopping me from living my life the way I'd like to. Feel like I'm old before my time. I've been on tamoxifen for 3 and a half years. Don't think I'll be able to last out 10 years. Will probably stop at 5.
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